On mornings like this when I sit waiting for your words I want my arms to be big and strong enough to hold your space. What happens to one happens to all. Thank you for your always honest and open thoughts.

Sent by kathe | 7:37 AM ET | 09-06-2007

Leroy~ Do you think that maybe the very words you just said, "CANCER PATIENT" is the description of us? Maybe even "PATIENT CANCER". Is this disease being patient waiting for us to give in? Or are we simply patient "Patients" of these Doctors and care givers, waiting patiently for a cure or answer to be discovered? Is that what we are?
I too, hate the words "Cancer Survivor". but then what is the origin of the name "PATIENT"? I admit I have not looked it up in the dictionary. Your message has just brought this into my mind. Good and thought-provoking Leroy!

Sent by JC Rakowski | 7:49 AM ET | 09-06-2007

Thank you leroy for todays blog.
I think about this often, about my identity, whether i want to say that i HAD cancer, or i'm a survivor of cancer or not even mention it at all. My family now identifies me as my daughter who has breast cancer, or sister or whatever....so its there all around me, maybe i need to embrace that thats a part of my identity now, and its ok, its like a tattoo i can look at and say theres history here, theres a story to tell. i read a quote recently that i liked, "scars are tattoos with better stories", maybe we're people with better stories to tell as well?

Sent by Jenn | 7:50 AM ET | 09-06-2007

I do have times when I forget I have cancer. They are very short but oh so very sweet. I think most of my friends never forget I have cancer. Each time I see them they alway ask "How are you feeling? You look good." Before I got cancer no one ever told me I looked good, Ha Ha. Cancer is the disease we have but it also may be part of our identity now. Like it or not!
Well, off to chemo I go. Everyone have a great day! God bless

Sent by David White | 8:01 AM ET | 09-06-2007

I don't want cancer anymore. I'm tired of throwing up and not having any hair. I'm tired of going to work for the insurance. I want my old life back and I promise to be better.

Sent by Cheryl McDowell | 8:07 AM ET | 09-06-2007

Leroy,
I wonder to myself all the time if I can ever get back the "me" that I once had. Something that at one time in my childhood I never wanted, but now desperately want back. I've been having a hairy few weeks. Chemo, school started, now a cold, and trying to get better again to do another round of chemo. In the back of my mind I know all this is bogging me down to an extent, but moreso I am watching relationships that I once had in school change and differentiate because I myself am different. I have always thought that I wasn't going to change, that I'd still be the happy, weird person that I was and to an extent I am, but to a different degree I know that who I was is never going to be seen again. Something like.. as you travel down the road the wind, rain, sun, and the experience changes you without even knowing until suddenly you see a reflection of yourself and don't realize it's you who you see. Sadly it seems, those times of forgetting that I have cancer are farther and farther between, maybe because I am in treatment, I'm not sure, but I'm reminded each day when I go to say something and I forget what I want to say or when I go to write something and realize that what I have wrote is not what was in my head. It's frustrating, and I have often times thought that perhaps I'm kidding myself. That's why I cherish these early morning hours because for some reason a little bit of me is back and I take full reigns for that short amount of time. Hoping for all the best for you.

Sent by Chanda | 8:14 AM ET | 09-06-2007

Well Leroy, you nailed it. Again. :) After my chemo/radiation all I wanted to do was to be normal again. I have accomplished that, with some degree of success. I look the same. I sound the same. I've met new people who don't even know I was ever sick. The people who knew me at the time have either forgotten, or they are secretely watching and wondering if "IT" will come back again. They wonder if I'm hiding anything. They wonder.

All human nature, I guess. I just know that for each day I get out of bed I strive to be as normal as possible and to fully participate in life. My past illness doesn't invade my thoughts as much these days - at least the part about wondering if/when it will come back. I do wake up every morning knowing that I've been given another day - and sometimes that's just enough.

Sent by Martha in FL | 8:17 AM ET | 09-06-2007

Leroy, you really hit a nerve with me today. As my two children start school and I go to open house, etc., I run into people I haven't seen in a while, and I think to them, I will always be a cancer person. We all know the kind and well-meaning things people say - "How are you feeling? You look so great!" For me, just about 2 years out from stage II BC, I feel and look pretty much normal (whatever that is!). So being asked how I feel all the time brings me right back to cancer world. I don't resent these questions and comments - I know that it just means that people care about me, which is wonderful. But it does make me feel kind of boxed in by my cancer diagnosis.

Will I ever see myself the way I used to? Unfortunately, I don't think so. There are too many reminders, some physical, some mental/psychological, all around me. Don't ge me wrong - I am almost always a glass-half-full kinda gal, so it's not like I dwell on "my cancer" all the time - but it is always always there, lurking around like a bad dog, waiting to bite me when I least expect it.

Sent by Gretchen Hoag | 8:24 AM ET | 09-06-2007

Leroy - I just keep thinking we can achieve a "new normal"...in some ways after the lessons we've learned we don't want to be the "old normal" - because "Now We Know"....how important each day is, and how much we have to appreciate all the good days and moments....
I think it's healthy to "forget" the disease, but also healthy to have the "new normal" structure to our lives.
The recent Crazy, Sexy, Cancer program had a great test explained in it - "Is this something that inspires me, or tires me??" A new test that I apply to many things in my life and a "new normal" that is really healthier for me.......
Besides, anyone that ever knew me, never would have described me as "normal" and some how with your dynamic, wonderful personality - I doubt you would have ever been described as "normal" (ha ha)- I'm sure you've always been exceptional!
Have a great weekend!

Sent by Ruth Chermok | 8:24 AM ET | 09-06-2007

I'm in an interesting spot with a work reorganization. It is really a bad situation but none of these new folks know me as Cancer girl, which in a way is refreshing. They may treat me badly, which I don't like but at least I know they are not giving me any special treatment. I have lost my Director who retired, my boss, who I have worked as a colleague with for twelve years who is leaving because he can't take it any more. It is an odd situation to be in. On one level I love not being identified by my disease on another level I know this really sucks because dealing with cancer should be enough! In a way I guess I am thankful because they have taken my mind off dealing with the day to day cancer stuff. However, it is frustrating to think of the negative energy that I am spending in what is probably the last year of my life.

Sent by Dona | 8:27 AM ET | 09-06-2007

Food for thought, as always...how do others look at us? And when they do, is the cancer all they see? I, too, don't like "cancer survivor", but even worse "cancer victim". I can only really let it victimize me if I allow it to. My cancer is confined to the brain, so after the surgeries and radiaton etc. if I wake up and know who I am and where I am, it is a good day. :) Blessings to you Leroy, I so look forward to your blog everyday - it gives me such a sense of belonging and helps eliminates my sense of aloneness.
Betsy

Sent by Betsy | 8:30 AM ET | 09-06-2007

Leroy I sense your need to be who you are ... a man, a friend, a companion, a writer and more. Everybody has something; you happen to have cancer. And, I have friends who happen to have MS. The difference appears to be the "time" factor ... the time remaining. Concentrating on this moment, which you do have and are engaged in your life, makes you no different than anyone else. It is only when we project into the future that your "time" looks different. I like to plan and project but I am getting a lot more engaged in the now, the present. Keep to this moment when you despair.

Sent by Pat Zalewski | 8:33 AM ET | 09-06-2007

Leroy,

You raise an interesting point. There are many who adopt the term "survivor" as a badge of identity. It becomes part of their personna and they are OK with that. If you look at a lot of the organized activities such as a Relay for Life, which I happen to think is not only a great fund raiser but a morale boost as well, the survivors who go are encouraged to be identified as a special group. Even the t-shirt says so. On the other hand, I agree that cancer should not define us as people. We have a disease just like anybody else. But I think we have to accept the fact that society puts a special label on us and even if the result is unintentional, we "survivors" become part of a unique group. Somehow "bird flu" survivor just does not have the same ring to it.

Sent by Dave Caplin | 8:44 AM ET | 09-06-2007

Hi Leroy,

You are still you, but having cancer does change us, I know I am not the same since I was diagnosed and treated. My core being is the same but I know for sure I don't stress about little things anymore. I always stopped to smell the roses and tried not to take things or people for granted, but I know I have changed as all of our experiences make us who we are. I have friends with cancer now and know that I still see them as they always were. There are definitely times when I forget about their cancer and then there are times when I cry with them and am scared with them.

Be well and take good care,

Lianne

Sent by Lianne Friedman | 8:53 AM ET | 09-06-2007

For me this is my new normal. My old life, although I would like despartely to go back, is gone forever. I have made up my mind to this and try to deal with it one day at a time, because it takes a whole day to deal with some of these side effects. I feel old and beaten but I get up everyday for my husband and kids to my "new normal" and try to deal.

Sent by Kathy Simmons | 9:04 AM ET | 09-06-2007

Leroy,
No one can ever be characterized by a single event or disease. We consist of both our genetic predisposition and our experiences. Leroy Sievers has a bold, inquisitive nature with a special expressive ability. He has been shaped by the loyalty of his friends and family as well as experience with the school yard bully and the bloody nose from falling off his bicycle. He was bored in church, annoyed at some school subjects, and enamored with other subjects. He has traveled the world and seen horrors beyond my imagination and kindness beyond words within the same setting.

Now Leroy is fighting cancer. He is doing so in his own way through the prism of who he is and what he has experienced. The cancer and the fight are now an integral part of Leroy Sievers. It is part of a much larger and very complex whole.

Even now, the fight does not consume every bit of his time. Leroy is not a cancer patient nor a cancer survivor. Those monikers are ridiculous pigeon holes which do not express the whole of a person even at a moment in time -even when receiving treatment.

There is no doubt that the fight is time consuming and difficult, but that does not change who Leroy has been and who he continues to be. This experience will change him, but that is true of every experience. This is another of many difficult experiences for Leroy. Who we are and who we will be is always complex. While we may assign names to aspects of ourselves to try to understand and convey who we are, the task of understanding the whole will always be elusive. We must humbly admit that we are not up the daunting task of understanding an entire person. We can attempt to understand aspects of a person and offer empathy with respect.

I appreciate Leroy offering an aspect of his life in this blog. I appreciate people posting comments on this blog who share a similar aspect in their lives. By seeing so many vantages on a similar aspect, it helps me make sense of my own problems.

Thank you Leroy and everyone
Gary
(Sorry about the 3rd person exposition, Leroy)

Sent by Gary Miller | 9:06 AM ET | 09-06-2007

I think, Leroy, that I can NEVER go back to pre-cancer me; not that I wouldn't like to fantasize about it sometimes!! Cancer alters your body, your mind, your feelings, your expectations, your dreams...I say alter, not destroy. It is one of those definite 'turning points' after which you traverse an alternate path than the one you imagined you were on! Psychologists say there are parts of us that are 'dead' and parts that are 'fully alive'--different balances in different people. Leroy you are fully alive, real and honest and connected to your soul and to so many of us who live in cancerland. Love to all today from Sherri in Texas, dx BC 4-06

Sent by Sherri Eggleston | 9:11 AM ET | 09-06-2007

Dear Leroy/All,

In a half hour I will be taking my husband for his chemothrapy. It seems that three weeks pass by very quickly. Before your know it...........it's time to go back..........just when he starts to feel like a person again. A very long time ago you said that this is our "New World" and as much as we try to get used to it life is never the same. Today is not a good day for me. I HATE chemotherapy day...........I HATE my new world! The sad part is that we can never have the old one back! Here I go venting again........I tend to do that on bad days. Thanks for listening.

Prayers to you and Laurie.

Sent by sasha | 9:17 AM ET | 09-06-2007

Our identity question is the big one. For if we take away our body and any of its aspects, then who is the "me" that remains? Are we just our brains, our bodies or is Truth being revealed?

Sent by sheron | 9:30 AM ET | 09-06-2007

Normal...who has one anymore? The cancer patients have a new normal to deal with everyday, every minute. My mom posts on here sometimes, Kathy Simmons. She posted earlier about a 'new normal'. Everyday is a new challenge to wake up to. Nothing mundane anymore like it used to be. You sometimes hear people wishing for some excitement in their boring lives, now I just wish for my old boring life. I am so grateful for what I have. It takes something like this happening to you to realize how wonderful a 'normal life' really is. I know that you as cancer paitents have a new normal, but us as caretakers do to. It is hard to watch and wait for something 'new' to pop up and see how it is going to be handled. It is hard physically and emotionally for all of us. How do you tell them to keep fighting when all they want is for it to all go away? I was looking at some photos from just last year, this new normal is so different, but it is good because I still have the time with her each day, each morning to talk about her day and what she is feeling, laugh about what happened the night before with the grandkids, and just vent and cry. This new normal, well it stinks, but I have the air freshner out right now. Love you Mom.

Sent by Gina B | 9:30 AM ET | 09-06-2007

Two years battling this disease, I don't consider myself a survivor and I never did like the term. It should be more appropriately reserved for those who have been declared cancer free. For the rest of us, we are still in this unknown journey that leads us down a dark path where we struggle daily to find a way and the strength to take the next step. I like meeting new people, people who do not know about my condition because they see me as being "one of them" who live normal lives and so we cover many interesting topics (instead of the "how are you coping" questions, "how was the scan result", etc. from well-intended friends). Am I hiding my true identity? Just for those moments, I forget about my condition and fall back into the normal world. A philospher said that we need to dance with life and we need to dance the most beautiful dance for we only have one life to live. Can we as cancer patients continue with this dance? Even before cancer, many of us including myself failed to do so. Perhaps this is one final chance to do so. As long as I am still alive, I will try my utmost to dance with life with passion, love, compassion, kindness and gratitude. And there is where my identity is. I am not just a cancer patient.

Sent by christine | 9:32 AM ET | 09-06-2007

After my friends CT scan of the chest was determine to be free of metastatic disease, I sent the quote at the top of your blog. It suddenly seemed appropriate, at least for now the roller coaster ride was over. This weekend at the pool, she was her usual animated self, and when she talked she described her husband (also has had cancer) and herself in terms of "Cancer this, cancer that. Even her husband's mother has cancer. Because so many things change after that diagnosis is given, it almost seemed appropriate.

Sent by Sue Chap | 9:32 AM ET | 09-06-2007

Boy does your blog fit right for me today, Leroy. This is a week of doctor's appointments for me. The surgeon check-back was Tuesday. The oncologist yesterday. The radiologist tomorrow.

Yesterday I was telling my my onc doc about all of the aches and pains I am now having and how out of breath I get with the slightest exercise. I said I should have started physical therapy three weeks ago to get myself back in shape. He looked at me sort of incredulousy and said, "it doesn't work that way anymore." Doing one thing like PT, or exercise, is not going to make me the way I was before. He said that my body is a war zone. It will never be what it was before.

Both he and my surgeon seem to be telling me that I have to accept my body the way it is now: minus 1/2 a lung, full of irradiated tissue, lots of inner and outer scaring, and damage from chemo poisoning. I'm not going to feel the same as before this war began.

It seems that at some levels I keep going in and out of denial. I don't want to take drugs. I want to be able to wear a decent bra without pain under my breast. I want to take a long (or even a short) walk without my hip aching and getting out of breath. I want to want be the old me again.

But that won't happen, the doctors are telling me. Okay...I'm alive. I'm here. The only thing I can do is keep on chugging and loving and laughing.

Thanks for being here for all of us.

Sent by Laurel M. Jones | 9:38 AM ET | 09-06-2007

Dear Leroy,

Resistance is NOT futile. Do not be assimilated!! If one must go down, I say go down still trying to kick cancer's butt!! You're still you, in some ways a worse, or a better you. Although it obviously has had a huge impact,literally and figuratively, please do not let cancer define your life. You have done so many other wonderful things. I know that's easier said than done, but please, don't give cancer a moment of triumph.

Sent by Connie E. | 9:45 AM ET | 09-06-2007

I too hate the word "survivor". I look at myself as having a chronic "DIS-EASE" that I need treatment for just like someone with diabetes. I am still a wife, mother and nurse. My life is different but I am adjusting. The fear of dying is more prominent but hope blooms every day from prayers and what I read here. We are all very special and having cancer only is a common ground for us to openly care for each other. Thank you for your poignant sharing Leroy as always you say what we feel.

Sent by Vicki (FL) | 9:48 AM ET | 09-06-2007

Hi Leroy-

I am experiencing the opposite in my life. I have a cancer that is resistant to chemo, so I never lost my hair and my immunotherapy was in-patient. My experience is that since I don't look different and I've gained weight, I beat the cancer. Wrong. Still have stage iv kidney cancer. Some people killed me off soon after diagnosis. Others, whom I see when I take my kids to soccer or baseball see I've completely recovered. But mostly, people have forgotten I've got cancer. I'm glad. And I'm not glad.

My family doesn't like to talk about the cancer because I'm doing so well, so I'm good. After we all watched my sister die of ovarian cancer, it's hard to think differently. Vicki never had the chance I have to live with the cancer.

On the outside, I haven't had to change anything. I'm gaining weight, and we all know if you're gaining weight you can't possibly have cancer. - NOT.

On the inside I'm waiting for the next metastisis (sp?). I'm worried I might have a hernia because my belly area, where I the incision for the nephrectomy is has been hurting and shifting.

The outside is a safer place.

Wendy

Sent by Wendy Murphey | 9:57 AM ET | 09-06-2007

Great topic! We identify you, Leroy, as our friend, our mentor, our muse and yes, our friend who has cancer and is a cancer fighter.

I never viewed myself as a victim, well maybe in the very beginning, and I don't today. I have melanoma, Stage III but am currently NED is what I tell folks who ask. I take the opportunity to talk about melanoma, sun protection, dermatology visits, self-exams, etc. for those who seem interested. If this identifies me, in some circles, as a cancer patient, that's ok with me. I am secure with who I am so label me as you wish - cancer patient, cancer fighter, cancer survivor (so far so good as it is often said). I wear each label proudly. Cancer has changed me but in a very good way. My adversity has enabled me to see clearly that we only have to look around us to see the struggles of others through a different prism. I can now fully appreciate the difficulty of their struggle and the nobility that they demonstrate in the face of overwhelming adversity.

Victim, not a chance!! Cancer maybe another adjective to describe me but it is not who I am.

While I would not wish cancer on my worst enemy, I cannot think of a better group, Leroy's bloggers, to walk with on this portion of life's journey. After all of the many things that you have done in life Leroy, you have found your purpose in life...to be here at this time and place to lead this band of bloggers with hope, encouragement, humor, knowledge, and make our lives better by your presence!!!! We are grateful.

Blessings and prayers.

Sent by Al Cato | 10:01 AM ET | 09-06-2007

Thanks Leroy for raising such a piercingly essential question and to all of you for having answered so wisely.
When I forget about how serious my situation is (which I'm capable of doing on a fairly regular basis), it's so devastating to be "reminded" of my illness when I see the sad expressions on the faces of my doctors just before they launch into whatever message they're about to deliver. The news becomes shocking all over again...as if I'm hearing it for the first time. Isn't that crazy?!
How much better I think it might be to simply accept that this stage 4 disease is just a new part of the regular, normal me and, in the present moment, go on with my life as best I can being regular me with stage 4 disease. That seems like a worthy goal to strive for. Thanks for the grist for the mill you all! Anita

Sent by Anita Solomon | 10:02 AM ET | 09-06-2007

I also struggle with being labeled a "cancer survivor". I'm still fighting it, so I'm not a survivor...yet...but when are any of us truly survivors? Each day we still beat it? A part of me doesn't want to give cancer the satisfaction of being part of my identity. I want to be known as "me"...the healthy me...the me who cares about people and relationships and the world, and tries to make life a little better each day for the people whose paths I cross. How dare cancer try to take that from me/us!

Sent by Norma | 10:17 AM ET | 09-06-2007

Cheryl -
I hear you and feel your pain. While I technically no longer have cancer, I'm still recovering, mostly emotionally, from a double mastectomy a year ago. Mostly I feel pretty good and am growing to accept this new body. But there are times, especially at night when I'm getting ready for bed, where I still cry and wish desperately to have my old life - and my old body - back.

Dealing with cancer is so hard. It attacks us physically and emotionally. It rips our lives apart and shakes our relationships. It does change our identities and our lives. We are NOT our cancer, but none of us are who we are before we got sick. And sometimes that's hard to accept since it is not a change we welcomed. Hang in there, Cheryl. You're not alone in this battle.

Sent by Karole Ives | 10:28 AM ET | 09-06-2007

I really know what you mean today, Leroy. I recently left my company (an advertising agency with mostly very young people working there) after 15+ years there. 2 years ago I was diagnosed with breast cancer. So I spent 13 years there without cancer, and yet I think I am known as the Cancer Girl. On my farewell email, I really wanted to write that I DON'T want to be remembered only for the cancer. I was not that before, and was more than that after. I kept thinking about it and thinking about it, and I wanted to shout it out -- but if I did, then I myself would be bringing up the cancer thing. In the end, I just wrote a farewell and told many of my memories. I mentioned "a couple of health episodes" but not cancer specifically. I suspect I'm still remembered first as Cancer Girl.

Sometimes in life, I see someone who is homeless or who has lost a child or even who has won the lottery. I think that they spent a large part of their life not knowing that this major, defining thing would happen to them. I just try to remind myself, to remember what I believe they would want me to remember.

Leslie

Sent by Leslie | 10:35 AM ET | 09-06-2007

I told someone on Sunday that I can't remember my life before I had cancer. I was diagnosed in Feb. and have chemo every week. Still I am strong, and I won't let it get me. I have my down moments, but there are still plenty of times when I live my life close to what it was before, my son is a senior in high school and my daughter just started sixth grade. I will keep everything as normal as possible for them and mentally for me. My husband and I own our own business and while I have not been able to go to work as much, we always discuss everything just like we did before. I will not bow down to this disease, and when it takes me i guess it will be my time to go. I will never give up the fight. If people can only see me as a person with cancer than let them see me being strong for my kids and my family and most of all for myself. I will survive this, because I can!!!!!!!!!!!

Sent by Chris Fitzgerald | 10:42 AM ET | 09-06-2007

Leroy, as my wife is now dying I say fight as long as you can; grab every moment that is allowed you. If there is one thing I can say that cancer did for us is that it gave us Time. Time to Love, Time to Laugh, Time to tell those around us that We Love Them. And as her life now comes to a close, I can tell you that all of that Time, was well spent.

Sent by Alan Cardenas | 10:42 AM ET | 09-06-2007

Leroy, I was once told the harder we resist something, the harder it is to accept. As I spend another painful night, I know I a cancer patient. What was once easy is now diffucult to do. The only breaks I seem to get is that when I go to the lab to give blood my health card has a green dot identifying me as a chemo patient so I get to skip the line and the wait. Cancer is the disease that has robbed me of my job and a big part of my life. It is as if it is an unwelcome visitor that has stayed and refuses to leave, and you what the say about visitors and fish, they stink after three days. In my case three years. My expieration date was three to five years, I still don't believe it. I think God will determine the date.

Sent by Miriam Estrada | 10:42 AM ET | 09-06-2007

Dear Leroy,

I delight in reading all the comments today about being a "survivor". That word has been one of my biggest issues about fighting cancer and, for the time being, still being around. I hate that word. I've always felt it would eventually make a liar out of me...that the cancer would return and then what do they call me, a cancer failure?

Anymore, the only time I truly feel "normal" is when I'm around people who don't know me, don't know that I have cancer. I'm doing my best to leave behind the trappings of being a cancer patient...I'm working again, I'm running everyday, I work out at the gym. But instead of those things being just normal, they have turned me in to some kind of hero. Oh, I can't believe you work that hard, Oh, I can't believe you run and I can't even go around the block, Oh, I can't believe how strong you are. The comments go on ad nauseum. I know that people genuinely are happy that I'm doing so well, but it sort of makes me feel like a freak. I long for the days when the comments were, "What crazy thing is Mo up to, now?" Not because I had cancer, but just because of who I am. Me, Mo, nothing else. Maybe that's just an additional price of having cancer.

All my best to you, Leroy, just plain old Leroy,

Mo Spikes

Sent by Mo Spikes | 10:49 AM ET | 09-06-2007

Hello Leroy and everyone,

First, good wishes for Eileen Pruyne, as she goes through some unexpected scans today. I hope that she is drawing strength from us.

I think we've all thought at length about about this aspect of our lives. Aren't we all changed, in that we have a new priority to come to this wonderful blog community daily or as often as possible? This is one of the things we do to strengthen ourselves both by giving and receiving.

I was wary about the term cancer survivor, until I walked a Relay for Life Survivor's Lap. The outpouring of personal support and love from those I knew and strangers during that lap was beyond enourmous. Since then, I choose to believe that "survivor" is a testament to the combined strengths of family, friends, medical community, and many others. Now, I don't mind having cancer survivor added to the list of descriptive pigeon-holes that have defined my adult life so far - college student, graduate student, wife, new mom, working mom, soccer mom, band mom, track mom, principal engineer, associate department head, walker, reader, skier, etc. Each of these descriptions defines some aspect of my life that has consumed me for some time or another.

Here are some examples of my "new normal:"

My room-mate from graduate school and I were diagnosed with different cancers within months of each other. We went through our chemo experiences together, talking and emailing at least daily. This has reinforced our friendship of more than 30 years, not redefined it.

My bookgroup is composed of a number of women, one of whom is an oncology nurse. Catching up on cancer "stuff" is one of the things we sometimes still do after book discussion, along with talking about work, kids, spouses, vacation plans and community issues. Now that I have NED, I find some of the women asking me more detailed questions about the chemo I went through last year. I think that this is a good way to do education in a one-to-one basis. Others in the group have family members with life-long medical needs. I'm just one in that whole group.

For the past 18 months, this cancer stuff has claimed a big part of me, but not all of me. It's given me some time to forge deeper relationships with family and friends...and to connect with a wonderful new group of folks. It's not who I am, but it is one of the things I have.

Sent by Sheara | 10:51 AM ET | 09-06-2007

You comments always hit home! This past weekend we celebrated my friend's 7th year stem cell transplant birthday; for as long as I've known her she's been dealing with cancer from the quarterly all day retuxin (sp) treatments to medication issues to winding up on a ventilator with pneumonia and, as all of you know, the list goes on. Cancer is always part of our friendship - she might be too whipped for a certain activity or we've planned something and the energy just isn't there but what I've realized is that even though cancer is a huge part of our friendship, we still get irritated and surprised by each other and there are times when cancer seems very far in the background - sure, lurking but not in the midst of everything. I do think of her as a cancer survivor but I also know her as my friend - a friend on whom I rely on for smiles, laughter, a voice of reason when I go off on the deep end, and for love. What I'm really trying to say is that she's more than the identify of cancer survivor - she gets special treatment because of the friend and woman she is not just because she has cancer.

Sent by Molly | 10:58 AM ET | 09-06-2007

Hi Leroy and all.

Important topic, Leroy, and one I???ve wrestled with a lot, both publicly and privately. In the occasional public forums I participate in, I insist on being John as well as John-the-cancer/deadly prognosis- survivor. On one occasion I objected when the biography I had submitted had everything about my professional life cut out, leaving me as a survivor only ??? all of the other speakers ??? Doctors of various kinds, had professional biographies.

However, unlike you Leroy, the overwhelming principal reason for my having a public voice at all is that I have a cancer that is more than likely to kill me. I am using it in part to strengthen to public voice of survivors and our voice with the professional communities whose avowed purpose is to serve us and keep us alive. If that weren???t enough, my bad haircut and the scar that it exposes identify me as a cancer survivor to anyone who cares to think about it for more than two seconds. I can get away with this as an older man. I suspect most women and younger people would be reluctant to do so. There are exceptions. A fifteen year-old osteosarcoma survivor (most regrettably and sadly now deceased I knew, went to school one day with her bald head painted in the school colors. The next day most of her schoolmates showed up similarly shaved and painted. This young woman, who suffered a great deal more than I have, is one of my greatest examples of how to live with cancer.

I will now own up to all of you that I am working on a book about life in general seen through the eyes of a person with a deadly cancer. A lot of it deals with the paradoxical nature of life with this disease and how it reflects back on the lives of the ???normal.??? One of the paradoxes in my life is that I am inevitably both John and John-with-cancer. My friends have given me the great gift of allowing me to function as John in a great many contexts where my cancer is irrelevant. They have also done me the honor of listening to me talk about its effect on my life and encouraging me in this.

Leroy, Thanks for bringing up the term ???resistance.??? Many years ago I identified myself as a war resister, and now still do. Obviously that identity is not now as obvious as my person-with-cancer identity. Unlike many of us, I have been purposely identified myself as a ???survivor.??? I like the term cause it connotes the ability to act both against my cancer and the labels within the medical establishment that accompany it ???primarily ???patient??? and to some ???dead man walking??? though most aren???t blunt enough to put it that way. To me patienthood connotes both dehumanization and denial of a voice. However, identification as a cancer resister is intriguing. It incorporates an important part of my past into my present and provides us with an even more active role. It also suggests another paradox ??? actively resisting that which, inevitably, if only partially, identifies us. I also think it has a certain pointedness and action orientation that other terms lack. .However, I think it will be a long term effort to get this term generally accepted.

Thanks for this thought provoking entry,

John Shippee
Atlanta, Georgia
johnshippee@htmail.com

Sent by John Shippee | 11:09 AM ET | 09-06-2007

Leroy, The "me" or "who" that we think that we are, changes all the time for everyone. I'm a child, I'm a teenager, I'm finally 21!!! Whether it is becoming pregnant and growing an alien in your abdomen, to that time nine months later, transforming yourself into a parent. Again something you can never change about yourself once it happens to you-- is not different than having a medical condition change you- diabetes, ALS and our friend cancer. I don't think that people only refer to me as the woman who was pregnant and is now a parent, or she takes insulin every day, or she has cancer. I do think that we are seen as people first and as an after thought- the cancer comes along, unless we are in a "period of activity" dealing with it. At these times people attempt to be sensative to our needs? That's my thought....

Sent by Deb | 11:20 AM ET | 09-06-2007

Absolutely, cancer is just a disease you happen to have, not who you are, Leroy.To me, you come across as a funny, adventurous,talented, impatient, kind, courageous guy. No doubt, cancer has changed you and accentuated some of the traits you already had, but it is not your whole identity.

My stage III breast cancer has not (yet) metastasized, so I can't say I know how it feels to be you. But now that my treatment has been over for a few months, I'm noticing most people have gone back to treating me exactly as before.Actually,I think they forget all about it! Of course, I never really forget, nor would I want to. But it's not so constantly on my mind. I can now go for a few hours at a time -- maybe even a whole day occasionally! -- without any thoughts of cancer.I'm wishing that for you.

Sent by Doris | 11:22 AM ET | 09-06-2007

My 6 year old son have been off treatment for 4 years now. As the time passes, we try to forget he had cancer except for his quarterly check ups with the drs and the daily struggle to make him wear his hearing aids (chemo damaged his hearing). We even debated on whether to go to the "Survivor Reunion" sponser by his drs to try to forget about the nightmare. But reality is cruel and we cannot escape from it forever. This morning was especially hard since I was very upset to hear that Pavarotti died from his straggle with pancreatic cancer, my son asked, "I had cancer and I didn't die. Why couldn't they save him?" There are times like this I wish I didn't have to answer his innocent questions.

Sent by grace | 11:31 AM ET | 09-06-2007

I'm 40 years old.
When I was 20 that sounded so old.
What I wouldn't do to be literally "middle aged".

Sent by Scott Fertig | 11:35 AM ET | 09-06-2007

The most important thing cancer gave me was the sense of how precious every loved being or place or experience is. Of how many active delights fill each everyday hour, of how many people have dedicated their lives and talents to supporting those of us whose lives have been touched by cancer. This year is 22 years from the first diagnosis, and I try to be as thankful now for this phenomenal gift of time as I was when I lived actively the reality of each day being a true gift. None of us (cancer or not) has any reason to assume we'll draw the next breath. It is all a gift. Cancer reminded me what I had forgotten, and made each day since something I more appropriately and actively feel and honor as the treasure it is. This sounds sappy, and I regret not being able to phrase it in less airy-fairy terms. But I cannot understate the value that cancer's wake up calls have brought to my life along the way.

Sent by Sarah | 11:42 AM ET | 09-06-2007

Leroy I think all of us think about that. I use to think people saw nothing but the cancer to a degree it was true. I don't mind being a survivor. They told me three months so..to be here is a great thing . But its never been the same as prior to cancer.
For me the third time was the worse I was depressed that we had done everything humanly possible to kick its rear back in to the stone age and a year later it reared its nasty head again.I knew what was coming. No bones about it..it was cut and dry. That was depressing for me. Then a friend another cancer patient said ..You will do it cause you love life. Its true no matter what cancer was a speck in the whole spectrum of my life. There was so much more then cancer however the thought of it treatment all of it felt like it would swallow me whole.
Some people are wonderful about it..others not so great.
I don't mind the word survivor at times and other times I wish it cancer never was for any of us.
The other thing..I think of your blog and you..And had it not been for cancer. None us would be talking about all of this..So I don't see you just with cancer..I see a wonderful writer, and person who is compassionate and kind to others. I see someone who lived an interesting life and shares that as well.
Its funny cancer is a weird thing it binds us with it and some are in awe of the word survivor.And thats okay to cause it took us a while to be one. ITs hard work to survive daily dealing with all of it.
Reaching up and hugging the moniter.Just so you know we care.

Thanks so much for sharing the hard thoughts even about how your feeling.

Kerry
http://clubsammichcafe.spaces.live.com/

Sent by Kerry | 11:49 AM ET | 09-06-2007

Wow! Did this hit home today! I refused to identified with cancer in any shape or form. I don't refer to myself as a survivor or a patient. I don't say I have in any way shape or form with the word cancer. I simply wear my t-shirts that say Cancer Sucks, or Never Give Up. Cancer does not have me. Atleast not today.

Sent by Kay | 12:08 PM ET | 09-06-2007

Leroy,

Maybe we are all of us changing from moment to moment. Cancer in a way is just another change...a big one and can't go unnoticed, but a change. There are many little changes that happen each day that don't rob us of the feeling that we are still the same people (ask any woman after forty about wrinkles).

In other words, there may not be an "old self" to go back to or for other people to see. It may be, aware or not, that we are constantly evolving into someone else...hopefully better, wiser, kinder than the self we used to be.

Sent by Diana Kitch | 12:18 PM ET | 09-06-2007

Mornin Leroy and Everyone!
This is what cancer has made me think about and know now, and I'm sure way before if I were to live to be 150.
I am who I am then and now,physically not as good or well, but mind and soul and beliefs and spirit.Cancer cant touch that!
Hugh, just let cancer try to get to that and I have to laugh.I don't like being labeled as a survivor either.I like to think that I have been a survivor all my 56 years of life.Stop and think about the millions of people on this earth that are truly surviving with little or nothing at all.I feel very grateful that all of us here have a fighting chance with the wonderful medical Doctors and Nurses,meds I could go on and on, but we all know who have come into our lives to help us with this fight.I am even grateful for the wonderful ones who come in and clean our hospital rooms.It is amusing now how everyone says Good to see you,You look great!I have to laugh and say Yeah, I'm still here,I do what I can.Ha.That really puts my cancer waaaayyyy in the background when I see someone.I find that now I listen more and really truly want to know how they are doing and they really open up and tell you.I feel like they look at us like now we know some secrets of life.I truly believe that we do know more about life now, than before cancer.And always looking for the good and humor in everyone and all situations in life I am going to live whatever time I have just like before cancer.No new normal for me that just makes me want analyze what that is, I don't have time for that.This is what it is,do what you can with what you have.There are gold medals won everyday for all of us.My Family,God Bless each and everyone have heard me say a gazillion times through our journey of life together,"You just do what you gotta do"!And "Whats done is done".Hey no one is gettin out of here alive,be how you feel and think ,let the love spill out and keep the faith.Love to you all.Thank you again Leroy for giving to us. Hope you are feeling good.You are who you are with or without cancer.It feels like two different worlds we live in but it is only one,we just have to do what we gotta do to be the best that we can be while we are here.
Lynda~Peace~

Sent by Lynda | 12:22 PM ET | 09-06-2007

Leroy,

Speaking as a daughter, I can tell you honestly that there are times, sometimes even long stretches, when I forget that my dad has cancer and just see him as my dad, as my son's grandfather, as a man. Of course, these long stretches (and by "long" I mean hours, at the most) do end and I am left marvelling at him and how he wasn't supposed to be around right now either. And I look forward to forgetting again...

Colleen
Milwaukee, Wisconsin

Sent by Colleen | 12:23 PM ET | 09-06-2007

A very important piece also for friends and relatives to consider. Shouldn't we resist reframing our friend or relative as transformed into a "cancer patient?" Should we not allow the space for the unchanged elements, unchanged by cancer? We don't pretend it's not there or never happened, but illness should not define the person and not the relationship. Why does cancer get this "special" role and not other illnesses?? Cancer robs enough, on its own.
Blessings to your spirit.

Sent by Rochelle | 12:38 PM ET | 09-06-2007

Wonderful post, Gary Miller!!

Leroy> Post Gary's exposition somewhere that you can read it often! And, as you read through the comments here today, be aware that there are a closetful of wonderful labels with your name attached to them *grins*

Labels, just like most things, have their good points as well as their bad. We tend to agree with those who define labels similarly to the way we do. Some labels serve me better in some places, other labels serve me better at other times. Labels often provide quick and efficient ways to classify...

"Normal" for my caregiver and myself has _never_ been a static thing. As we've grown and evolved, so has our sense and define of normal. Each new job/career, each geographic move, each new relationship, each lifestyle change brought with it a new define of normalcy.

How far would I have to go back, and would I ever find that yearned for state of 'normal?' I think not. Before the cancer change for me was the Big Change: menopause. I consider that I had a 'normal' menopausal journey, but do I want to return to being in full blown menopause again? No thank you!

During that time, I was also providing full-time care to our then 80 year old parents. Over the course of the past ten years, up until today, "normal" for us was/is in constant flux. That's why I've posted so often that we make plans so we'll have something to do in case there's no emergency.

I'm similarly adapting to the normalcy of the recent change prompted by some cancer cells. *shrugs* Am I wanting to return to another me, a previous me? Nope. I'm wanting to carry the knowledge and normalcy I acquired there forward into the new learnings and normalcy of today's tomorrows.

So, we consider us all to be normal people coping with cancer cells. If there's anything abnormal about us, it's the cells. *shrugs* I agree with Vicky in referring to this as "dis-ease" and we're learning to ameliorate it.

Some days we play the cancer card; some days we keep it in our pocket. With time, it's gotten around that we have the card to play, so I don't see where I have the right to take umbrage at that, or any label we wear, whether it be a designer label or one just off the rack.

For me, the bigger question is, "Just what the heck is 'normal,' anyway?

And surviving? We're all surviving more than just cancer! *shudders at the thought of what else is out there*

Here's wishing us well! Stay hydrated!!

-dp

Sent by dp | 12:51 PM ET | 09-06-2007

I usually say I am "surviving cancer." I guess that changes the noun to a verb. It is something I am doing, not what I am.

Sent by Ruth from Virginia | 12:54 PM ET | 09-06-2007

When I think of who I am the first thing on my list is not cancer patient or cancer survivor. The important things are Christian, grandmother, mother, friend, and quilter. Maybe that is because I am NED right now and had cancer the first time 52 years ago. My first remission lasted 25 years. I know this thought process will change when the beast comes back and I know it will come back. Right now I am grateful for not being in the fray; I pray for those of you who are; actually I pray for all of us.
Charlotte in Temecula

Sent by Charlotte Kewish | 12:58 PM ET | 09-06-2007

Settling into the new normal takes a long time. It's like a series of earthquakes and aftershocks. Just when you're getting comfortable along comes another reminder. I mourn the old me where I could say something, *anything* with certainty. And when the landscape is changing as yours is (to further "torture the metaphor") you are constantly having to readjust to yet another "new normal." Sending hugs and hopes you can find the serenity of acceptance, let go, and let the world change and all away around you.

Sent by Alycia Keating | 1:02 PM ET | 09-06-2007

I am always reminded I had cancer. Even though I completed chemo over 2 years ago, I still have headaches, insomnia and all the other side effect/ailments caused by it to contend with. It's like a dark cloud that just won't go away.

Sent by Tammy | 1:07 PM ET | 09-06-2007

Please let me rephrase that.
What I wouldn't do to be ENSURED that I was "middle aged".
I guess that goes for anybody. Even perfectly healthy people.

Sent by Scott Fertig | 3:26 PM ET | 09-06-2007

Leroy, Sounds like you're very confused. Is it really important to determine whether you are normal Leroy or cancer patient Leroy? Does it really make a difference? All of us are normal and life throws many different kinds of obstacles our way. Ours happens to be cancer, others maybe parkinsons, muscular dystrophy or diabetes and even obesity. Everyone has their cross to bear. We have ours. Leroy, I retired since I wrote last. I still can't believe this is a permanent arrangment, it feels more like I'm home recuperating from surgery or something not retirement. It's a surreal feeling. It's a good feeling though. I love the freedom, these days are mine to do whatever I want to do with them. You mentioned that you wanted to write a book once but found it to be too difficult. I agree, I thought about it too, but it sure is an overwhelming task, isn't it? I was going to write about my 17 years of dealing with cancer but I really don't know what to begin. Take care.

Sent by Ruth White | 3:36 PM ET | 09-06-2007

Leroy, Thank you for an excellent blog. My days are started reading your blog and am always amazed at how you are able to connect with all. You make us all feel that we are not alone.

Sasha, my thoughts are with you and your husband today. Unless a person has been involved in this situation with the one they love I don't believe they can understand the roller coaster affect it has on our lives. My thoughts and prayers are with you both.

Alan Cardenas, I am so glad that you are involved with this blog. It gives me strength and I hope it does you and your wife also. My prayers are with you both. Stay with us.

Sent by dorothy | 3:36 PM ET | 09-06-2007

Leroy,
My almost 3 years old grandaughter saw my psoriasis and proceeded to say that you "have many bobos grandpa". And then she added "it is okay, I will put bandaid". Everytime I am down becuase of this psoriasis, I go to that place of good memories. It is okay to remember fond memories to escape, even momentarily mental & physical pain.

Sent by Mel | 4:12 PM ET | 09-06-2007

I don't much care for being called a survivor, but as I've said here before, it sure beats "cancer victim", which used to be the way cancer patients were described.
I suppose that many people with other illnesses have experinced the "otherness" that we sometimes do. Anything which causes one to look different than the majority, or to have different (usually less) physical ability can cause one to be labeled, treated as less than before the illness happened, and to be pigeonholed. Lepers had extreme experiences of being totally removed from normal society permanently. In years past, those with tuberclosis were quarantined, often at great distances from their family and friends in sanatoriums until they recovered, or died. People who have had traumatic injuries that leave them with disabilities strive to be treated as they previously were, and to be given credit for what they know, what they still can do, and who they are. Labels can be painful. They can be limiting, and can marginalize us. I suppose that part of the experience of having an illness like cancer can be development of heightened sensitivity to those we encounter with "disabilities", and their wish to be treated as a person, plain and simple, and not as their medical diagnosis.
I also dislike a term that I see and hear all the time connected to cancer. Pavarotti "battled" pancreatic cancer. I think sometimes that journalists get lazy with certain situations or descriptions. Noriega was a "strongman", it's the "war against cancer". Come on people...think! Come up with some other adjectives that don't bring to mind someone strapping on armor. I can't tell you when I last carried a sword and shield. It certainly wasn't since I've been diagnosed with breast cancer.
I believe that part of the experience of a life changing illness is that there is an opportunity to become more open to other people, their humanity, and our own.

Sent by Nancy K. Clark | 4:18 PM ET | 09-06-2007

Thank you, once again, for giving voice to the 'defining' we all struggle with.

Sent by Ariella in NH | 4:59 PM ET | 09-06-2007

Hi Leroy,

The only time I have been able to separate myself from something that is happening to me is when I have been in denial. It's not uncommon; I hear stories all the time about people who maintain that as a lifestyle. But, thank goodness, we are different. Denial are not shoes we like to walk in for long. Life is way too short to spend alot of time there.

I am a compound of experiences. Everything that has happened to me has played a part in make-up of me. I've never felt my cancer has been any more important than any other experience in forming me. I am a wife, a sister, a daughter, a student, and a friend; those experiences have a far greater in impact on me than that of cancer. In and of its self, cancer is not something that makes me unique because there are just too darn many of us with this disease. But I cannot deny it has not created changes in me other than on the cellular level.

Besides, if I failed to recogninze my cancer as a part of me, I never would have found you.

Sent by Teri Thomas | 5:05 PM ET | 09-06-2007

This is a great topic. One I think about a lot. Right now, two years after being treated for two cancers at once, I don't have signs of either one recurring (knock on wood). But I have pretty big after-effects of treatment. I can barely swallow, what I can swallow is limited, I have daily mouth pain, muscle pain from the other area where I had surgery and a bunch of other stuff. If I had been able to recover so that my "new normal" was more like my old normal, I think I would be able to forget I am a cancer survivor a lot better. And I probably would--I don't want to hang onto it, or surviving it, as a primary identity.

Yet that's still so much a part of my life because of my day to day struggle to get to a better "new normal" that I think it has become more of my identity because of the after effects. Maybe one of these days, the identity will be more one of a partially disabled person(because of my swallowing) and it won't be so much a matter of how I got that way. Right now, though, giving in to THAT identity means accepting a state I'm not sure I can't still change and maybe improve on.

I guess although I don't want it to be my dominant identity, it hs been such a difficult experience, it's natural that it will always be part of my identity. And, as you say, my beaten up body won;t let me forget it.

Sent by N.R. | 5:25 PM ET | 09-06-2007

Do I ever forget that I have stage 4 breast cancer? No. I feel it from the neuropathy in my hands to the numbness in my back thanks to reconstructive surgery to the fatigue, mouth sores, etc. that come with treatment. And I see it in the mirror when I'm trying to disguise my lack of eyebrows & lashes or see the bump of my portacath or the scars on my neck, back and chest.

Do those around me ever forget that I have stage 4 breast cancer? I'm pretty sure they do. Other than the lack of hair (which makeup and wig take care of), I look healthy. And like you, I haven't let this disease define me or own me. I still rally for work in the morning. I'm involved in all my kids' activities, and raise my hand for volunteer work in the community. My husband says that people must forget, otherwise they wouldn't look to me to host the holidays or plan the get-togethers. When I was first diagnosed as stage 4, I went through a period of people looking at me like I was already gone. So for the sake of living a fairly normal life, I'm glad if they can forget. Even if I can't.

Sent by Julie Smith | 5:42 PM ET | 09-06-2007

I like what Ruth from Virginia said. I've been surviving anal-prostate cancer for thirteen years.

Yes, your life changes, but it changes, anyway...you get older, age brings with it certain limitations (mostly as much as you allow).

One of the results of my surviving has been having to use a colostomy apparatus. It's annoying, sometimes frustrating, occasionally (after the fact, funny) but I don't have time to feel sorry for myself. The day I have is today. I'll spend it as fully and fruitfully as I can.

A little Cancer story to help you laugh.

My family (two sisters, a brother and a sister-in-law) were gathered around me as I was coming out of anesthesia. When one sister noticed I was coming to, so to speak, she leaned over and said, solicitously, "My dog had what you have and we had to put him to sleep"

Looking her straight in the eye, I muttered, "Don't ask why you don't have my power of attorny, or eternity."

Sent by Raymond Weaver | 7:39 PM ET | 09-06-2007

Cancer has changed my physical being..and has revamped my emotional and spititual self...but now, with no boobies and no hair, I can cut the grass with no shirt on!!!! Just call me by my new name, Bob!
Smile! ;]
Liz

Sent by Liz Zimmerman | 8:20 PM ET | 09-06-2007

Hi, Leroy, Your words today sound like the Buddhist koan, "Who am I?"
There is a person who is a man who is sitting at a computer, writing... about a man who is a writer who has cancer who is thinking about what it is to be a man who has cancer. Are you the writer? the man? the cancer? The thinker? Insert image of an Escher drawing here!
I hear my zen master's voice shouting, "Your thinking cannot help you!" Some things, thinking can help. Often, though, thinking seems to be the mind/ego's trick to keep us confused and not present.
I know you as a human being who is honoring a commitment to write every day and share as deeply as he can. Thank you.

Sent by Ruth | 8:51 PM ET | 09-06-2007

Long May You Run is playing. And I just found out that my soon to be ex has prostate cancer. I'm about a year in the clean stage, my bother died from male breast cancer. If I treat my husband normally I'd be screaming about the mess he left and the money he wants from me for alimony. Instead I pour him a glass of wine and offer him my support. There is no normal after diagnosis, as many have expressed --perhaps there never was.
Long may we all run...

Sent by J. Ron | 8:58 PM ET | 09-06-2007

Dear Leroy,
Today is the first time I've read your blog. I've had cancer since I was 22, I'm 25 now. I admire that you can write about it like you do. I still don't think of myself as a cancer survivor, even after mulitple rounds. It sounds like someone who has beaten it, like it won't ever come back. I hate it. I hate what I have to deal with. I hate how it can make me look. I really hate telling people about it. More than anything I want the people around me to stop being so crazy positive, and agree with me that it sucks.

Sent by Megan | 8:59 PM ET | 09-06-2007

I have been so consumed with work the past couple of days that I haven't been able to check the site. I NEED to read all of your stories; I NEED this site. I don't think it dawned on me until now, but yesterday marked ONE year since my dx. It's hard to believe that. I often wonder what life will be like; I'm only 26. While I know I'm lucky, still, some days I can only be devastated that my cancer has spread locally. I just want to hear it's gone...if only for a short time. It's becoming easier and easier with each day to talk about my disease...friends at work ask constantly how I'm feeling and most days I feel good. My taste is back in full force and I'm thrilled about that, although, my appetite is not quite back...perhaps some weight will come off :)

Some days I yearn to be "normal" but often I realize this is my new normal. Wondering what is going on in my body..waiting for my next doc appointment...then reality hits me and I know that I have to continue fighting for some normalcy for my sweet Sophia. She just said Dada for the first time last week...I just want her to know that I'm always going to be here for her...you know? Yes, I will fight if not for me, but for my Sophia...the light in my darkness some days. Some good news--my husband is officially an RN, he just passed his state boards...AH life does go on!!! Thank goodness! You all are in my thoughts...with love!!!

Sent by Tess from KY | 9:13 PM ET | 09-06-2007

I have missed reading the blog for the past two days. I have just returned from cancer world. I was coughing up blood Tuesday morning, and apparently this is not a good thing, so I won a short stay in the hospital. It turns out it is pneumonia (which there is a vaccine for now, so I urge all to go and get it if you can,, this is my second pneumonia in a year and it sucks.) After being transferred out of the ER I was sent to the cancer floor. I had not been there in about 2 years. It was rough. Oh the staff was great as always, being the kind and competent people who kept me alive the last time. What was different was me. I really didn't want to go back there, and I had no idea how it was going to effect me. Like most people in remission I know that a return lurks around every corner, but I really hope it missed me. I also got to see how much more damaging this can be to my family. My son, who is four years old, was crying because I wasn't home for him, and today when I got home he wouldn't break contact until he fell asleep. It was heart warming and breaking at the same time. I really wish there was something we could all do to keep us from having to go through this ever again. Maybe someday.

Sent by Brit | 9:32 PM ET | 09-06-2007

These ideas intrigue me- both the desire to return to normal life- that "other side", and the idea that cancer may take over our life for a while or longer, or forever, but does not, or should not, take over our identity- . I struggle with them now, coming up on the two year mark. What a challenge that is; to remember that our daily experience with a disease and how it impacts our future is NOT to be confused with who we are deep at the core. Is that possible to maintain for any duration of time? Treatment and living with cancer, or the fear of recurrence, can be so overwhelming and all encompassing, but we are still the soul we were before. Wiser, a bit more savy, and for me more in touch with sadness and joy and living-right-now, but also still the same...
And I question how much I want to be normal again. Ha. Because a part of my old normal was living with a sense of security that I never had a right to. I want to be more aware- of the whole picture- and all the possibilities- this time around.
That is normal for people who have been touched by disease. The new normal I guess.

Thank you for writing about this.

Sent by Cathy Skubik | 11:41 PM ET | 09-06-2007

Thanks, Leroy, for putting into words something I've been musing about lately. I guess I've made a certain uneasy peace about not being the person I was pre-diagnosis. Oh, I'm essentially the same, but my body has gone downhill 80+ mph - kind of skinny (helluva weight loss program, eh?), flagging energy, whispy hair - a little like Leatherhead in "Last House On The Left." Ha! And while I'm pretty much OK with where I'm at, I wonder how the others in my life see me. Do they notice the decline? The shuffle rather than the stride? I love David White's comment about never having been told so much that you look good. But all in all, that's just the dressing. The big change I've experienced through this adventure is the interior change. The staring in the face of your mortality and being given the opportunity to grow, and mellow, and fine-tune the more caring and loving parts of yourself. To gradually detach from the less-than-important and perhaps superficial aspects of who I was and nurture the spiritual more. All that, of course, when you're not retching or reeling from fatigue and pain! The other thing that is hard to escape is getting my head around the 3-6 month prognosis thing knowing that it's a "guess-timate" at best, but still wondering if any part of it is really true. Do I sell the farm, or keep plowing the field until I drop? I guess I'll just keep plowing - it's what I know. In the words of an old Emmit Rhodes song: "You must live 'til you die, you must fight to be alive..." And because each new day brings new possibilities, new insights, new appreciations, I think it's the right way to go. And you know what they say: "Every day you wake up on this side of the grass is a good day!!"
Remember, you don't walk alone!

Sent by Alan Beauregard | 11:59 PM ET | 09-06-2007

On the other side of the scale, sometimes we need to be defined as the Cancer patient. When Burge was getting close to the end, he had a hard time getting his friends and extended-family members to admit to themselves that his time was near. No matter how he tried to explain that they needed to be prepared, many would try to dodge the reality.

Sometimes you have to be the Cancer Boy/Girl to get others to pay attention. We often used the situation to remind others to get checked and to take their health serious. Although Burge walked the lap at the Relay for Life, he knew he was still in the war and that only a small battle had been won. Too many people would like to think "I don't have to worry, they are coming up with new meds, procedures, etc. everyday. Unfortunately, not soon enough.

I wish none of you were Cancer patients. I wish all of you had your old lives back, but I doubt it will happen and some of the new life may not be all bad. We learned to stop and take each day as a gift, something we didn't always do before...something I wish we could do again.

My best to all today and always,
Nikki from Kansas

Sent by Nikki | 12:25 AM ET | 09-07-2007

Hi Leroy,

I struggle with this still. It depends on the day how I integrate my cancer self. Usually, I think in terms of having been through the cancer experience, although I am reminded regularly that unlike that emergency appendectomy or when I broke my leg, it goes on. It lessens in intensity, but does not ever really end.

Tomorrow night I am supposed to celebrate with a couple of friends another cancer milestone - no more anti-cancer meds. (For now.) And yet, it is hard to celebrate. My little safety net, with my little pills being my tallismen against further harm, is now gone. In the first moment there was a thought to celebrate no more toxic stuffs. After that moment, has been the little niggling worry and fear.

Cancer is part of my identity and my life. It has forced me to make serious alterations in my life, as well as in my dreams and plans for the future. For a long time, I was afraid that I had no future. Now I know that I do have some kind of future, unless something else happens and I've already used up my allotment, but it is cancer-influenced, with limitations that I never had in my life before. I still really miss my life before cancer, but there is really no return - even when I try to pretend. However, I agree with my mother, always the optimist, that everything is a mixed bag, with positives and negatives, and you can choose the way you want to look at things. For me, I'm still here. And I really didn't expect to be. That is something for me to celebrate.

Also - thank you for your thoughts yesterday, Leroy. I spent the rest of the night watching Monty Python on You Tube, and enjoyed it immensely. One of my favorites being "Always look on the
bright side of life...." I haven't seen any of these in a while.

And for Cheryl - It does get better. Just hang in there. You may feel like a shipwreck for a while, but it does get better. Most of the side-efects are recoverable once the poisonous stuff is no longer pushed into your body. And when you've finished and are feeling better, you will be glad that you hit it as hard as you could.

Sent by Lilly T. | 12:42 AM ET | 09-07-2007

Hi Leroy: Just wanted to check in and say hello and make sure you were doing well... regards, Krupali

Sent by Krupali Tejura MD | 5:03 AM ET | 09-07-2007

I guess I think of myself as a cancer soldier. I have been engaged in a battle for my life for almost two years now. I look forward to the day when I will be a cancer veteran, not engaged in daily battle, yet forever changed by the war, living with the disabilities, the memories, the altered perspective. I like that imagery better - the cancer is something apart from me, not of me.

Sent by tex | 7:17 AM ET | 09-07-2007

Well, Leroy, to me, having terminal cancer is like becoming a parent. Once I became a parent there was no turning back. I'll always be a mother no matter where I go or what I do. This change in my status was by choice and has brought me much joy. I wouldn't have it any other way.

My diagnosis of having treatable but not curable cancer was not by choice and has permanently changed my life.

All future plans are no more than three months ahead. Longer range planning is just plain silly.

I've had 4 years to get used to being terminal due to an unexpected and extended remission. It hasn't gotten any easier.

I have chosed to live as though I'm living, not dying, and am truly grateful for every day I wake up.

Sue

Sent by Sue | 12:53 PM ET | 09-07-2007

You are right that Cancer is a disease but the fact that my Mom died of cancer (Stage IV BC) when I was 24 and she was 55 has become part of my identity. It's almost 9 years later and I have learned to live with her death and on most days I am now at peace with it, but I do know that our life together before cancer and during cancer will be with me and a part of me for the rest of my life.

Sent by SA | 11:49 PM ET | 09-07-2007

so many cancer patients
i think of myself as a chemo survivor,stage 111 melanoma but my Daddy had leukimia, 1 yr before me and now he's gone,good luck to yiz all, with love,Bronny

Sent by Bronwyn Wells | 12:39 AM ET | 09-08-2007

For my husband, and therefore me and our daughter, the cancer aspect of his identity is kind of like being a hypenated American at this point. Like Italian-American, or African-American, or you name it. My husband's is genetic, HNPCC, and his brother, mother, uncle and aunt all died from it. He was first diagnosed in 2000, with colorectal, which resulted in an ileostomy. 4 years of remission before it returned and he needed a Whipple. Since Jan 2005, his life and ours has been a seige of surgeries, chemo, complications and so on. On a bad day, he views his cancer as "Viet Namization" -- yeah, he's also a veteran. Hasn't worked since Dec 2004, hasn't weighed much above 135 and he used to be a chubby 195).

Cancer IS part of his identify now, or has reshaped and modified it. Reflected in his art, his attitudes. Not all for the bad, but definitely there, and shapes our present in 2 week gulps, our future (financially and otherwise), our celebrations, the way he is a father, and our marriage. There is not one aspect of our life and interaction that it has not affected.

I can appreciate that those who don't have "chronic" cancer have a different take, but for my husband, it is part of his identity. On the bright side (!) today he felt good and drove himself to go fishing early, early this morning.

Sent by Teri | 7:24 AM ET | 09-08-2007

well, I am a little late responding to this entry. it couldn't have been posted on a better day. for the first time in 2 years of my son playing football in high school, i actually felt like going to help the others mothers help paint the field for friday night's game. i thought it would be no problem...i can handle this. it has been 7 months since my last chemo treatment...i'm ok. i got out there ready to go and about 1 hour into it, it hit me. the nausea,dizziness, cramping in my msucles, pain in my almost 2 foot scar on my leg and irritation arounf my illeostomy. People were wanting to drive me home. I knew i just needed to get some electrolytes in my body. i went home and did a little bit of work and went to bed. i had to get prepared for my daughter's game across town. she cheers for the middle school. on top of that get my 5 year old ready for thenext school day because we would be home late. made it through that day exhausted. I had to keep going. i want to be the same as i was before i got sick. friday afternoon came and it was time to get my daughter ready for the gala and get to the high school for my son's game with my 5 year old in tow.i made it through half way the 4th quarter and i told my husband who is on the field filming for the coach, it was time to go. i literally was in bed f rom the time i got home friday until this morning (sunday). you think you are feeling good but your body, mind and spirit has been battered from being poisoned, burned and radiated. it looks as if it never ends. i go wednesday to have tumor markers checked and schedule ct and pet scans. just another week in cancer world. thank you ofr your post. it makes me realize, i am not alone.

Sent by kim | 1:51 PM ET | 09-09-2007

It's funny but this is days later and there is something I realized after I wrote my 1st entry that I felt I really needed to share. Even though I do feel that my Mom's battle with cancer is part of my identity I've never considered it part of hers.

Sent by SA | 10:57 PM ET | 09-09-2007

I've "survived" cancer. I've also "survived" two job out-placements in my early fifties,and a new, but seemingly secure federal job--which I now need to stick with for another five years until I can "retire" (another word whose use I increasingly question) at 62 WITH insurance benefits (till I can go on Medicare.)
I deal with the fact that I have two thirds of a bladder and sometimes need to pre-plan activities to more accessible toilet facilities..but have told myself--and believe--that a smaller bladder for the moment is likely more convenient than voiding into an ostomy pouch or a plastic bag...both of which are more convenient than being dead. At the three year point since my initial surgery, I no longer feel AS thrilled at a "good" three month check, yet I'm always pleased /relieved...yet in the back of my being I always wonder what the NEXT check will bring. Does any of this make me a "survivor"? Maybe MY cancer isn'-or wasn't severe enough..or active enough to qualify for survivor status. I know many others whose cancer-ups seem far more ominous to me than mine. Yet I'm reminded, and grateful, every time I look at myself in the mirror and see that ten inch scar that we got clean margins by the barest millimeters...and had I not noticed blood in my urine when I did, I'd likely be dead today based on statistics. So maybe a two month surgical recovery was a small price to pay for going on with life.

Have I "survived"? I did...what I needed to do at the time given the options. Me today is different than me before, and frankly I like the current me better. I don't know what my cancer future holds...but there's not a whole hell of a lot I can do about that EITHER unless or until that time comes when my cancer issues change from their current status. So for the moment,cancer is just part of the mosaic of who I am

Sent by Joe S. | 8:53 PM ET | 09-11-2007

I completely identify with your comments. Almost seven years out, normal has disappeared over and over again with no place for me to settle. so there is more and more a growing sense that the essence of who I am is not my body (body is this a hard thing to wrap my mind around). I am a human BEING and not a human doing. so all there is for me it to be present with as much equqnimity as I can muster in any moment.

Sent by Ellen | 12:43 PM ET | 09-30-2007